On the Occasion of a Two Year ‘Shuntiversary’…

Two years ago today my youngest son was recovering from his second invasive brain surgery. This time, to place a ventriculoperitoneal (VP) shunt into the right rear side behind his ear, to constantly drain cerebrospinal fluid (CSF) from the ventricles in the brain where it is produced, into his abdominal cavity via a catheter tube running internally down his neck. This device, though far from perfect in its design, with something like a 50% fail rate in the first year or two after placement, is a life-saver for children with hydrocephalus. It stops the fluid, which has trouble draining naturally, from building to the point where it squashes the brain against the skull, leading to brain damage and eventually (if left untreated) death.

Way back then, when he was just three months old, we were amazed at how resilient he was and how he had bounced back from his first brain surgery like a champion, but there were so many unknowns about how much his conditions would impact him as he grew and developed.

A (relatively) quick update on Josiah’s progress

It’s been a while since I posted about how things have gone. We have had a few scares, beginning last year while we were on holidays with what we didn’t realise at the time were ‘vacant seizures’. These developed into a more serious form of seizure activity in November, with our boy very ill, limp in body, and hard to rouse. Ambulance… lights and sirens… emergency… lots of medical professionals… several days in hospital. Needless to say this wasn’t fun. It has also happened twice since, including a couple of weeks prior to this post. Thankfully, his medication seems to work the majority of the time and we are hoping a recent change in dosage will avoid further seizure activity.

His cerebral palsy on his left side is much more mild than doctors originally thought it would be, and he is making good headway towards walking. He enjoys time in his walker, supported by a harness as he lunges around the house, and has even taken some steps in the last few weeks, supported by the walker but without the harness on! With ongoing physical therapy we hope to continue to help him improve the use of his left hand.

His vision is probably his most noticeable daily challenge. When we found out he had cortical visual impairment (CVI) we began listening to a podcast called Kaleidoscope: The Cortical Visual Impairment Podcast. It was great to hear the experiences of other parents of children with CVI and, more importantly, to find out that there was an assessment tool and a system of targeted interventions designed by world-leading expert in CVI Dr Christine Roman-Lantzy. I began speaking with my wife about trying to find someone qualified to perform a CVI range assessment and we soon located an orientation and mobility specialist based in Melbourne. I made contact and it turned out just a few weeks later, in March 2020, she was to make her annual trek to Adelaide for the WOMAD World Music festival – so we had a face-to-face meeting and have met regularly ever since to work on implementing interventions that we hope will help improve Josiah’s functional vision.

While neuroplasticity is a huge, complex and constantly expanding field of neuroscience, and it seems there are no guarantees as to exactly what the outcomes of our efforts will be, we have seen some encouraging signs since we started the CVI early intervention therapy. It is said that children who start at Level 1 on the CVI range scale (essentially no usable vision) can often progress to Level 7 out of 10 – a vast improvement in usable vision, with some children able to read independently and enjoy orientation and mobility benefits that come with improved vision. Josiah started at Level 1-2, but the signs of improvement we are already seeing definitely give us motivation to keep going. One story that might shine some light on what this looks like happened a couple of months ago. Having never really reacted to faces before or shown any real signs that he can see people around him, we noticed he started to say ‘see toothbrush’ when we presented it to him after mealtimes. So, my wife crept up on him at the dinner table and just positioned herself 45 degrees from his face, relatively close (but without casting a shadow) and after 20-30 seconds of moving his head around he locked on her, reached out his hand, fumbled slightly and then found her face while saying “see Mummy, I can see Mummy”.

This, combined with the steps he has taken in his walker without the harness, actually gaining control of his legs and putting one foot in front of another to step forward, have been amazing moments. We are so thankful to God for his progress… and we hope and pray we will see more!

We are aware that we are on a journey, and it’s not a sprint on a straight track with many available shortcuts at our disposal, but we are blessed to have the resources we have around us – including a wonderful team of physical therapists, medical specialists, family and friends who love, care for and support us as a family.

A full sentence. A profound truth. A hope for the future.

Both of my boys love to talk, and read. They are both doing really well with language. Josiah seems to have made up for his visual deficit by listening intently and learning to speak quite well for his age.

Interestingly, probably because of the regularity of reading Bible stories before bed as a family each night – which both boys enjoy and look forward to – one of the first full sentences Josiah learnt to say was “Jesus came back to life.”

I don’t recall intentionally teaching him to say this himself, but he picked it up and he says it fairly frequently when Jesus is mentioned in our home. There are many phrases he is still to learn that would be helpful for him to know, but I’ve got to say, I find it amazing that this particular simple sentence has jumped out to him so early on.

The cross of Christ is absolutely central to the Christian faith – that is where God, through the substitutionary sacrifice of his Son taking our place – dealt with the sin that separated us from him, putting sin to death through Jesus… but the work of God in saving sinners doesn’t end there. Jesus’ death puts to death that which causes death (sin), so that life, true and eternal life, can be ours through Him. For a detailed (and I mean detailed) treatment of this, see The Death of Death in the Death of Christ by John Owen.

For if we have been united with him in a death like his, we shall certainly be united with him in a resurrection like his. We know that our old self was crucified with him in order that the body of sin might be brought to nothing, so that we would no longer be enslaved to sin. For one who has died has been set free from sin. Now if we have died with Christ, we believe that we will also live with him. We know that Christ, being raised from the dead, will never die again; death no longer has dominion over him. For the death he died he died to sin, once for all, but the life he lives he lives to God. So you also must consider yourselves dead to sin and alive to God in Christ Jesus. Romans 6:5-11 ESV

The fact that Jesus rose or ‘came back to life’ as Josiah says, is a profound truth for all of us. It’s profound for unbelievers because it should force them to take seriously the claims Jesus made about His life and His work, and His call to repentance and faith in the only One who can guarantee life that cannot be destroyed eternally by sickness and evil and pain. There is so much talk of people wanting to live their best life now, but Jesus promises us a best life that goes on forever with Him and will far outweigh even the best this world has to offer. The promise of ‘your best life now’ rings all the more hollow when you put yourself in the shoes of a child who undergoes hours of therapy each week in an attempt to help them see basic objects that other children their age are more than familiar with, or to navigate their world though it appears a confusing kaleidoscope of information, with seemingly no visual rhyme or reason.

The resurrection of Jesus provides hope for the future, and I hope that as Josiah grows it will be something he holds on to – remembering the simple sentence ‘Jesus came back to life’. It is the resurrection that makes Jesus’ death an act of salvation (saving) from sin and a source of enduring and sure hope of eternal life for all who trust in Him, rather than just a tragically unjust crime perpetrated by a group of people against an innocent victim. It is the resurrection that gives us grounds for confidence that despite the difficulties we face in this life, we can have a true and lasting hope. This hope is for a better day, a better life, the best life – in the truest meaning of the phrase – a life we will live face to face with the creator of life, in his presence bodily, without ailments and disabilities and sickness and sadness and countless other results of sin.

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5 ESV

I have recently been reading a book on suffering called Suffering and the Sovereignty of God, edited by John Piper and Justin Taylor. In it, Joni Eareckson Tada – a quadriplegic Christian woman who has been paralysed for forty years following a horrific diving accident – writes about how the hope of the resurrection raises us out of hopelessness caused by our present circumstances, because He delights in us (according to Psalm 18). She says, “I had prayed for God to help me. Little did I realize that God was parting heaven and earth, striking bolts of lightning, and thundering the foundations of the planet to reach down and rescue me because he delighted in me. He showed me in 2 Corinthians 1:9 that all this had happened so that I would “rely not on [myself] but on God who raises the dead.” And that’s all God was looking for. He wanted me to reckon myself dead-dead to sin-because if God can raise the dead, you’d better believe he could raise me out of my hopelessness.”

There’s something extremely powerful, comforting and hopelessness-shattering about knowing that God uses even our most painful weaknesses to show His glory, to cause us to rely on Him, and ultimately to work for our good. He can raise the dead – He raises spiritually dead sinners to life in Him (Ephesians 2), and he raises physically dead people who have died ‘in Christ’ to live with Him forever. I pray that as Josiah continues to grow and develop, and as he faces times of intense challenge and sometimes hopelessness along the way, that he (and all of us who are walking this journey with him) will remember that God has promised to one day raise us to new life with Him… and on that day it will become ever so clear that these light and momentary afflictions (in contrast to the beauty and perfection of eternity in His presence) have been working for us an eternal weight of glory – and that is the best life we will ever experience!

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Corinthians 4:16-18 ESV

From Here to Eternity: Assurance in the face of sin and suffering // Ray Galea

From Here to Eternity book coverI think it could be said that Romans 8 may well be the most glorious, joy-inspiring, hope-giving chapter in the book containing the clearest and most comprehensive treatment of the Christian gospel message in the entire Bible. It’s hard to choose favourites, and of course we must let all of scripture speak rather than honing in on one chapter or book in isolation, but I have certainly found in my own walk with God that the truths contained in Romans 8 and 9 in particular have been a balm that breaks through the difficulties and sorrows of life, shining a light that causes our sufferings to pale in comparison to the glory that will be revealed in us (Romans 8:18, 2 Corinthians 4:17), and helping us to face them in faith and with joy and hope.

In this wonderful book by Australian pastor and author Ray Galea, the reader is taken on a journey through this chapter, section by section, beginning with our life in the Spirit as believers (including the incredible declaration of ‘no condemnation’ for those who are in Christ), our status as heirs with Christ as a result of our adoption as children of God, the way in which God works through and in the midst of our suffering – with the Spirit interceding for us in our darkest moments – for our good and for God’s glory, to the assurance we can have thanks to God’s unbroken chain of redemption, and concluding with the amazing reminder that nothing, absolutely nothing, can separate us from the love of God.

Continue reading

Humble Calvinism // J. A. Medders

Humble Calvinism book cover by J. A. MeddersHumble Calvinism is a relatively short, very well constructed overview of the five points of Calvinism, with a distinct focus on how they should cause those of us who subscribe to them to live, act, and evangelise as believers.

Having come to Reformed theology around five years ago, one of the first books I read at that time was John Piper’s Five Points Towards a Deeper Experience of God’s Grace – a book I would highly recommend to this day. Jeff’s book Humble Calvinism reminds me of that volume in its pastoral approach to explaining and applying the five points to the life of the reader.

Continue reading

The Imperfect Disciple – Grace for people who can’t get their act together // Jared C. Wilson

The Imperfect Disciple has been sitting in my library for some time, and it is the first book I have ever owned (and now read) by Jared Wilson. When I finally got to reading it recently I found myself asking, “why on earth did I wait so long to read this?”

The book is written conversationally, making it highly accessible, and yet there are so many brilliant turns of phrase it feels masterful! This relatively informal style doesn’t distract, it helps you settle in, it connects you to the message – and goodness knows it is a message we all need to hear.

Continue reading

Coronavirus and Christ // John Piper

Coronavirus and Christ by John PiperIn this very timely, Bible-saturated yet succinct volume titled ‘Coronavirus and Christ’, John Piper’s wise pastoral heart and masterful application of the ancient truths of God’s word to a sick and dying postmodern world once again come to the fore. He shows us how to see the glory of God and the goodness of God and the sweetness of God’s sovereignty in and through the COVID-19 coronavirus, he helps us understand some of the billion things God is doing through this current situation – which is not outside of His control and plan – and he helps us focus on the call of Christ presented to us in the coronavirus… a call to repent and believe in Him, a call to stay awake because we do not know the day or hour when He will return, and a call to love and serve and pray for others during this significant time of suffering. Finally, a reminder of God’s ability to use the coronavirus to serve his global mission, and a pastoral prayer, offer much needed perspective and give voice to those who may not not always know how to pray as we ought during this global pandemic.

In short, I highly recommend this book to all believers seeking to think biblically through the COVID-19 pandemic, and to those looking to find comfort, peace, wisdom and joy in God in the midst of it.

Visit DesiringGod.org and download the free eBook or audiobook.

COVID-19 – Sovereignty, Lament and Hope during a Global Pandemic

With the world in what seems like an unprecedented level of turmoil thanks to a threat that in and of itself knows no cultural or geographical limits, I’ve found myself asking, as many of us probably have, where do I fit in this situation, what do I think about it, what can I do about it, and how should I interpret these events in light of my beliefs and convictions? It raises existential questions about living vs existing, about mistakes made by the human race, and about the nature of God and how He relates to us as creatures living in His world… and by extension how we should relate to Him, especially in times of trouble. Through all the negative news reports, the empty supermarket shelves, the toilet paper shortages (Australians are crazy for toilet paper now, and it makes little sense as to why), the heightened societal anxiety, the media hype, the talk of ‘herd immunity’ and vaccines and lengthy time frames, the talk of ‘flattening the curve’ with good hygiene and social distancing – what has stuck out to me most prominently is that we as humans do not like one thing in particular… there is one thing we will do our absolute best to avoid before collectively freaking out when we realise our best isn’t good enough and it’s unavoidable: the reality that you and I are not in control of our lives, at least not in an ultimate sense.

Continue reading

A year ago today…

A year ago today I…

A year ago today I had just been through one of the most stressful experiences of my life.

A year ago today I was sitting in a hospital room with my wife, talking about our new baby boy and deciding on his name.

A year ago today I was leaving that same hospital room periodically to check on my brand new baby in the Special Care Baby Unit, hoping his oxygen levels would stabilise, and that the raft of negative outcomes and worst case scenarios we’d been asked to prepare for would not eventuate.

Continue reading

What did the midwife say? // Taking a stand against the culture of death.

As the 7th of June approaches, my wife and I prepare to celebrate the birthday of our second son. He is a beautiful, mostly happy baby who is gradually learning to interact with a world that he isn’t really able to see as a result of damage to his visual cortex from a Grade IV intra-ventricular haemorrhage… and yet he still finds joy. Over the last twelve months I’ve learned a lot, and I’ve written a lot – from the shock of discovering his medical condition through the stages of processing what it all meant and receiving updates from various doctors, through two brain surgeries and three fluid taps to the confirmation of cerebral palsy on his left side and the likelihood that his vision is very low, if it is there at all – through all of this the (active) sovereignty of God really has been, as Charles Spurgeon put it, ‘the pillow on which the Christian rests their head’. Until now though, I haven’t written about something else that happened on the day our son was born. In some ways it was small, it probably only lasted 30 seconds, and yet it is burned into my brain and still boggles my mind. It was something one of the midwives said while we were waiting to go to theatre… but more on that soon…

Continue reading

The Most Important Seeing

“His optic nerve is pale and visual activity is poor. The next step is more testing. I’m sorry I can’t give you a more definitive answer right now, but I’ll see you in four months time.”

These [paraphrased] words were not what we were wanting to hear when we took our almost five month old son to an ophthalmology appointment yesterday, but reality doesn’t care about what you want to hear. We have known ever since the diagnosis of hydrocephalus from a grade four bleed in the brain while in the womb that there was likely, medically speaking, to be some effects from the internal brain injuries during the developmental stages. The neonatologists even went as far as to say there was a high likelihood that the resulting impact would be fairly severe, given the serious nature of what occurred somewhere between 20 and 32 weeks. I remember asking about whether his hearing or sight would be impacted on the day when they broke the news to us about the likelihood of hemiplegic cerebral palsy on the left side of his body. I remember the horrible feeling when they said “we don’t know”. Fast forward several months. He has been through so much and bounced back from all his surgeries so well that it became tempting to think perhaps we were over the biggest hurdles. The last couple of weeks though, I’ve felt squarely back in the land of many unknowns as far as what lies ahead.

Continue reading